April 08, 2016

We've had a fair amount of things going on lately. March and April have been kind to us!

Late last month, we took our second trip away from home and spent a night in Bend, about three hours southeast of Portland on the other side of the Cascade Mountains and in Oregon's high desert. We got some much-needed sun, relaxation time, and coming back, Michelle had a multiple-day burst of energy beyond anything we've seen in months. A change of scenery seems to have done us wonders.

Spent last night in Bend, Oregon on a short overnight with @incanus77. Had a fantastic time and loved seeing some blue sky.

The new FOLFIRINOX treatment is proceeding and we are nearing the end of the first month (two 14-day cycles). Michelle has a rough full day at chemo, then about three days of intense fatigue, mental cloudiness, and general discomfort, then she grows stronger over the next week and a half, allowing us to do more and more. The worst symptoms continue to be fatigue, finger and mouth cold sensitivity and nerve issues, and sensitivity to light.

On March 30, Michelle had a check-in with the oncology physician assistant. Overall, things generally are on an upswing; however, again confusingly, two things are concerning us.

First, Michelle continues to lose weight, though adding chicken to her diet and focusing more on protein has turned the trend of her albumen and total protein levels to a positive one. The main problem here is her ability to take in food and drink due to an almost ever-present feeling of fullness. She already has to eat many more small meals and snacks throughout the day, as well as focus on sipping fluids.

Fruit is a good way to sneak fluids

Some medications have kept her appetite up; it's just a challenge to always be pushing the right foods and focusing on the right nutrition. She also needs to take upwards of twelve very large pills every day (among a pile of other medications) in order to digest food properly, and that in itself is a challenge since liquid isn't enough to get them down and applesauce is needed, which takes even more valuable food space.

Michelle takes 10-12 of these a day

Michelle is supposed to be eating more protein in a day than Justin eats on a pig-out day, combined with not enough space to put it and wanting to not make food entirely about facts and figures. On the plus side, she is now preparing and cooking one meal a week, getting her into the kitchen and doing yet another thing that she loves.

The second concern is that the PA noticed a visible size increase in one of Michelle's "sentinel nodes"—affected lymph nodes that can be more easily monitored during treatment. As a result, the oncology team has moved her next CT scan up a month. We're not sure what its results will tell us about the current treatment, if anything yet, but stay tuned if we learn anything that we can share here.

Michelle's folks will be out in Portland again next week. That and the great turn of gorgeous sunny weather we've had has done wonders for our spirits and a sense of healing in the house. We continue to do more and more activities with friends, enjoy meals out, and are looking forward to some other travel soon.